Bone Mets Thread
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iwrite, were you stage 4 de novo
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I was de novo
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iwrite, I was in serious pain and they did an MRI thinkiing I had a colapsed disc. They were very wrong.
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so on Tuesday my MO talked about stopping chemo after my next cycle and just staying on immunotherapy. My CT scan showed no new activity and my markers are consistently going down. He said he has another triple negative MBC patient who was able to just do immunotherapy for almost 2 years before having to go back to to chemo. The thought off this of course make amends happy but also scares me. I guess the cycle of being on and off chemo is my new path in life. I don’t mean to sound ungrateful, I’m very grateful for the treatments that are keeping me alive. Sometimes I just get pulled out of my denial andthe reality of this disease smacks me in the face
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Paulinek- A leap of faith required! If it were me, I'd go for it!!!
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Paulinek. Thst sounds pretty doable. Thatz coming from someone who's not had chemo. I thought chemo would br for life. Good luck with it.
Gail Mary
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So now I'm really perplexed. Bone scans a week ago looked really promising- like gone. Even the tech showed me the monitor and said they looked better. I saw they posted in the patient portal today that the lesion in my humerus is unchanged. And no new mets which of course is great . But what the heck. I See dr monday. I dont usually ask to see the images myself but I will this time. I hear he will have his own opinion! Ct results werent posted. Hmmm. Nope wont read anything into that.
Gail Mary
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thanks all! I have some time to decide but I think a break from chemo would be great.
Gailmary my MO told me that scans are difficult to read with bone disease and healed lesions sometime show up the same as active disease? I haven’t had a bone scan since the originall that diagnosed the mets. I know you are not in chemo but do you get tumor markers checked with blood tests?
A question for the group...can anyone reccomend a good cb oil or cream for pain?
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Paulinek...this works wonders for me. It’s a combo of 2 different meds. I have to get it at a compounding pharmacy.
Maybe ask your dr to write it for you? Prayers for no pain!!
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Hi guys. Yes. I want to ask you guys who have been taking zometa or zoledronic acid. Anyone got those nasty secondary reactions? My mother started with fever on saturday and it's been up and down like a roller coaster.
She has a liver problem as a consequence of the first RT, so we have to be careful with any fever medication. But here is what I would like to know if you or anyone you know had such secondary effects after the standard 3 days? like on day 5 or 6? and if so, how long did they last? so far the secondary reactions to the zoledronic acid are what has been the toughest for her.
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TNMTNGAL, my best friends husband is from Elizabethton, TN!
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Mex Mary - I am on Xgeva so have no info for you. Others should chime in soon to help you.
Gumdoctor
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small world!! =
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MexicanMary - I'm on Zometa and have had two infusions so far. I got the reaction first time. Chills, fever, body aches which started 24 hours after the infusion and lasted another 24 hours after that. So two days altogether. I don't think it's weird to have 2-3 days of fever, etc but I wonder if anything beyond that should be reported to the doctor. I know I would. My liver enzymes have always been slightly elevated so I don't use Tylenol, but Advil worked just fine. The second infusion was a lot better. It was recommended to take Claritin a few days before and a few days after the infusion and this time I had no reaction at all.
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Moomala your reply and Gumdoctors' are balm to my heart. I actually got my mom a blood biometry as I learn more and more. Of course, the results were off the chart and what I read online says that it is to be expected for them to read as if she has neutropenia because she's just crossed her tenth day after the QT.
Like you suggested Moomala, I contacted her hemologist and I forgot to tell him that she's on her 10th day. Then, he said that I should put her in the hospital because she's at risk of getting an infection and I wonder: Isn't it more dangerous to be in the hospital? Then mom, of course, does not want to go to the point she almost cries.
Regardless, I will be looking to talk to the oncologist directly. No more beating about the bushes. oh geez, I am scared beyond my witts. I am beginning to see ghosts and spells and whatnot
Thank God for you guys. Bless you all
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You sound like a wonderful daughter Mexican Mary. Your mom is so lucky to have you looking after her. I think going to the hospital is scary because underneath my logic is the idea that I might never come home. Or that being in the hospital is where all the sickness and treatment is so I'll just stay here in my little bubble where I have control over everything. It's a tough call to be more firm with your mom and I admire you for doing that. On my particular treatment, if I run a fever of over 100.4 at any time, I'm to call the cancer center. I hope she's feeling better today and that if not, you can get hold of her doctor or perhaps even the infusion center. I was just diagnosed with Stage 4 in April of this year and I still get panicky here and there if something isn't right. You are doing just fine - it's a really scary time for you and for her. My metastatic friends here at home are quite experienced with everything and seem to handle it without letting alarm get too overwhelming. I hope to be like them some day but I'm not quite there yet. Big hug to you and your mom!
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Anyone on Xgeva or Zometa ever do anything crazy like get a dental implant while on those drugs? The entire top front of my mouth is crowns and one of them is failing. The tooth is loose so I don't think it can be saved. I just noticed how loose it is today so I have not seen my dentist yet.
The tooth next to it is already an implant, I have two. So, I am not sure if a bridge is going to be a good option. Plus, that means paying for three new crowns ++++
I just had these crowns replaced, too. The loose one is a little over a year old.
I wish they would hurry up and learn how to regrow teeth with stem cells or something. Until cancer, my worst health problem has been my teeth, starting with an accident when I was in my teens.
Having front teeth is definitely a quality of life issue for me. I might be willing to take the risk of an implant. Thanks for any experience anyone can share.
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Oh man Olma! That stinks. I have had teeth problems since I was teenager and have many crowns and an implant. I haven't been faced with the possibility of an implant while I'm Zometa but in thinking about it I'm imagining the biggest challenge would be convincing a dentist to actually do it. I asked my dentist about major work when i first started Zometa. Luckily I had just completed years of all these crowns and things but he said he'd be super iffy about doing major dental work on me like implants. Front tooth though? You're right - that's gotta have a repair. I will look forward to hearing what the dentist has to say about options.
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OH Olma. That does stink. From what I hear when someone has a bone fracture or needs dental work done while on Xgeva you simply stop taking it for a few months. Okay, maybe not simply but it is not abig deal. Definitely ask your MO. Good luck.
Gail Mary
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I saw my MO the other day. Radiologist said bone met stable but my MO hesitated at that. I don't remember clearly what he said but then showed me. It's still there but it's fuzzier then before. Not shrinking but fading. The liverspots are unchanged since January. Would have to remove to know if it were cancer; to small to biopsy at 0.6 cm and under. Nothing new. I'll take it. Feeling good.
Gail Mary
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Thanks, ladies, you're right - going off for a while is probably the alternative. Even to do a bridge, I think I will need one root canal. Then again, loosening of teeth can be a symptom of ONJ. Maybe I already have it! It's only this one tooth which I know was already weakened, so I am going to try not to worry until I know for sure.
Glad you are feeling okay, Gailmary. : )
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Hi Olma61: I have been on Zometa for three years. The last molar on my left, bottom side is loose, so loose I think if I gave it a good yank, I could get it out! My regular dentist referred me to an oral surgeon who told me that even if I was his mother, he wouldn't pull that tooth. He said the issue is that it may never heal up. I now have lost half a tooth on the right side so am curious when I go, if that can be fixed. I'm running out of sides to chew on, but then, I have mouth sores right now (am on Doxil infusion) and have trouble eating anyway. I'm hoping nothing else breaks. I do have one implant, in front of the loose one, and it is fine, so far. What a wacky world we cancer patients live in!
Cindy
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It is a world of its own, indeed. I am already missing teeth in the back, on the left because a bridge failed right before I was starting chemo, so we just yanked them. And on the right because another crown failed around the same time. So like you, I am also running out of places to chew!
I was hoping to get stable enough to go off Xgeva for a while and do something about the back teeth...now I have an emergency in the front. Saw my MO last week and she wanted to reduce my Xgeva to every 9 weeks instead of every six...maybe she'll let me go off to get this tooth done. My last Xgeva was 9/10 so I have a little head start here.
Thanks for sharing, because misery loves company xo (although things could always be worse)
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Olma61: I get Zometa every month with my Doxil infusion. The oral surgeon told me that the bisphosphonates in Zometa stay in your body for a long, long time. I've never had Xgeva but I understood it has a different makeup than Zometa. I had a bridge fail on the left side where the loose molar is (it was the anchor) but that was along time ago. I had the implant to replace the tooth that was pulled, requiring the bridge. At the time I was diagnosed with Stage IV, my dental situation was stable. I'm hoping the tooth issue can be taken care of soon! Good luck with yours!
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I was on Zometa so many years, they really don’t have any studies to cover my situation! I began monthly zometa iv’s early 2011. Had them for two or three years, don’t remember exactly. Then went to every 3 months until 2018. The whole time I was stable with bone mets on Arimidex. I worried about potential zometa trouble like the jaw thing or kidney thing or brittle bone thing that can happen with too much zometa. So I asked onc to get the zometa every six months. She was reluctant but since she had no real data of an mbc patient being on zometa that long, she said okay. A year later (this March) I had progression to a vertebrae.
I don’t believe the cutting back zometa was the reason for the progression, and that’s because as you say, wallaby, the biophosphenates stay in our system a long time, which I knew. But then I wonder why we are given it so often, if it remains in the body?
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yes, I think Xgeva leaves the system more quickly than Zometa. I hate to go off completely but I also don’t want to be a jack o lantern this Halloween 🎃
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I was on Xgeva for 2 years and it kept my bone metastasis to just one (on my Ilium). Had radiation and presto, clean bones.
After 20 months, I started to have problems with one molar on my lower left side. It was painful when I ate on that side, so had a root canal. It did nothing. About 3 months later I had an infection on my wisdom tooth on the same side. Had no option but to pull both teeth. And I had literally just had my Xgeva injection. I did develop ONJ. After 1 year of visiting my oral surgeon weekly, it is just about there... 99%.
The downside is that without Xgeva my cancer has spread through my bones - Vertabraes, and hips. It’s a damn if you do and damn if you don’t.
Bottom line is that if you need a tooth pulled, you need to be off Xgeva for at least 3 months. It’s not a problem to have a root canal while on Xgeva. Just don’t have your tooth pulled!
I have been told that once the onj is completely healed, I have a green light to go back on Xgeva!!0 -
LoMa, thanks for sharing your experience.
Yeah it was after going to quarterly Xgeva that I had a bone met become active again.I asked to go to every six weeks in June and now the MO wants me to go to every nine weeks again because last scan was NEAD.
I really did think there was a connection between spacing out the Xgeva and waking up the cancer.
Oh well...I had to leave my dentist a voicemail because they don't come in on Wednesday. I sure hope they give me an emergency appointment tomorrow so we can at least get an X-ray
And I was worrying about the repair being a problem...but the loss of the tooth itself is a risk I wasn't considering. I'm pretty sure it is the tooth itself that is loose and not the crown. So I'm going to lose it one way or another. I feel like if I bit down on something hard right now it would crack
UPDATE: for anyone interested - saw my dentist today. Did X-Ray. Nothing is broken, tooth is loosened due to bone loss. No infection present. His tx plan would be extraction and two-unit crown on the tooth next to it. But I made an appointment with my oral surgeon for Monday. He will do panoramic Xray and further evaluation. Talked to the nurse at my oncologist's office too. Waiting to hear back with word from doctor but I think LoMa (?) was spot on with three months off Xgeva being required. Hope this tooth will stay in my head until then.
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Olma. Maybe I am crazy, but back when I was a small girl I used to do everything with my teeth and once I actually tried to unbend the wire of the mesh that holds basketballs. Of course, i chipped my teeth. and since I speak "funny" because (according to the dentist) my tongue is too long I "hiss" a lot, so I eroded the enamel even further.
anyway, My mother had a similar problem and her dentist covered the gap with paste. That's it. So I went to a dentist (not the same one) and asked for the paste. What he did was interesting. He recreated the small portion of the teeth I had lost through the chipping and the hissing and (well I think that was accidental) the paste ended up spreading to the adjacent teeth.
So, if the Xgeva will cause damages before it begins the benefits. why not ask the dentist to "paste" your loose tooth together with the others? that way, IMHO you can keep them without having done any further or more processes that could be potentially dangerous.
Moomala. Thank you SO much for your kind, kind words. They are -particularly today- a balm in my heart. It has been a tough day as a daughter. One of those where you can't do any single thing right.
I know it's her frustration and fear and worry speaking but that does not make it any less painful.
Oh and BTW I went to her MO and reported the BB and he gave me the leukocyte developer so that she would prevent any damage or infection. It was a great decision and the doctor IS indeed open and, of course, as I am reading constantly, it seems that it does have some weight.
Mexican HMO is a scary thing. Any doctor, in average. consults about 50-70 patients per day on an 8 hour shift. without considering hospitalized cases. Common hospital rooms are of about 8-10 beds and there are about 10 common rooms per floor with only 5 bathrooms!! And, naturally -as I guess happens in the USA too- there are those who think that it's their right to have someone else clean up after themselves. so it is not rare to see gauzes and surgical stuff tossed all over the bathroom floors. The showers, of course are clogged.
I already told my mother, I will NOT take her to that hospital EVER EVER.
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MexicanMary thanks for the suggestion! My dentist did try to cement the tooth in place yesterday. The cement crumbled off within a couple of hours. My bite is really tight, probably what helped this one become loose.
I got a call back from my onc this morning and she said I can go ahead and get an extraction even though its only been 4 weeks since last xgeva. Hmmm....not sure I want to do this without waiting longer. Anyway, I'm seeing the oral surgeon Monday, I guess I'll decide then. I am holding out hope he will do an implant, maybe if I go on antibiotics during the work it will be okay. But I don't want to pull the tooth yet regardless.
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